ME/CFS
Very severe → no benefit
Very severe ME/CFS, still bedridden, no benefit from LDN
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
Before I took the LDN my cfs got worse for years and there was no triggering infection for it.
In context ↗ - At worst: Very severe
After two months I had to get an NG tube because the fatigue was so heavy that I couldn't eat by myself.
In context ↗ - Now: No benefit
I feel worse from day to day ... It keeps getting worse and I don't know what I can do now it just won't stop.
In context ↗ - Began after: nothing they could name
Before I took the LDN my cfs got worse for years and there was no triggering infection for it.
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Vale 50498's CFS worsened over years with no triggering infection, and by early 2023 they were very severe. In February 2023 they tried LDN; afterwards a constant adrenaline-like feeling began, POTS worsened greatly and an NG tube was needed for eating. It never faded, and medicines, supplements and exertion all made it worse. By late 2024 SIBO had cleared but other symptoms were unchanged and they remained bedridden.
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What they tried
Also tried
Their words about each treatment
- LDN · Much worse
6 months ago I tried LDN while being very severe. After that I has tachykardia, a strong feeling of adrenaline.
In context ↗ - benzos · Worse
The biggest triggern so far were benzos, Vitamine D, nicotine (patch) and LDA.
In context ↗ - NG tube · Not said
After two months I had to get an NG tube because the fatigue was so heavy that I couldn't eat by myself.
In context ↗ - oregano oil · Worse
Natural antibiotics like oregano oil make my chronic stomach and intestinal inflammation worse
In context ↗ - Rifaximin · No change
The SiBO is gone. Sadly it did nothing to my other Symptoms.
In context ↗ - iron · Worse
iron triggers extreme neurological symptoms that I can't stand for 2 weeks
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | CFS worsened over years, no triggering infectionBefore I took the LDN my cfs got worse for years and there was no triggering infection for it.In context ↗ | Not stated |
| 2023-02 | very severe before trying LDN6 months ago I tried LDN while being very severe.In context ↗ | Very severe |
| 2023-08 | constant adrenaline feeling after LDN; POTS 30 times worse; NG tube for eating6 months ago I tried LDN while being very severe. ... After that I has tachykardia, a strong feeling of adrenaline.In context ↗ | Very severe |
| 2024-11-25 | still bedridden; SIBO cleared but other symptoms unchangedThe SiBO is gone. Sadly it did nothing to my other Symptoms.In context ↗ | Severe |
Adverse events
- Low-dose naltrexone“6 months ago I tried LDN while being very severe. After that I has tachykardia, a strong feeling of adrenaline.” In context ↗ Heart rhythm problems
- Low-dose naltrexone“The first two months it was really hard to get any sleep.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“My POTS got 30 times worse and keeps getting worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“After two months I had to get an NG tube because the fatigue was so heavy that I couldn't eat by myself.” In context ↗ Other
- Low-dose naltrexone“Its so bad that I already thought about assisted suicide because the feeling of adrenaline is unbearable.” In context ↗ Suicidal thoughts or attempt
- Benzodiazepines (unspecified)“The biggest triggern so far were benzos, Vitamine D, nicotine (patch) and LDA.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“The biggest triggern so far were benzos, Vitamine D, nicotine (patch) and LDA.” In context ↗ Made symptoms worse
- Nicotine patches“The biggest triggern so far were benzos, Vitamine D, nicotine (patch) and LDA.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“The biggest triggern so far were benzos, Vitamine D, nicotine (patch) and LDA.” In context ↗ Made symptoms worse
- Oregano oil“Natural antibiotics like oregano oil make my chronic stomach and intestinal inflammation worse because I probably have bile acid reflux.” In context ↗ Gut side effects
- Iron infusion / ferritin repletion“iron triggers extreme neurological symptoms that I can't stand for 2 weeks” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
I even don't have food PEM anymore and it seems like I am unable to crash.
In context ↗ - POTS & dysautonomia
My POTS got 30 times worse and keeps getting worse.
In context ↗ - Mast cell (MCAS) & allergies
I also had problems with mcas.
In context ↗ - Sleep problems
The first two months it was really hard to get any sleep.
In context ↗ - Heart symptoms & palpitations
After that I has tachykardia, a strong feeling of adrenaline.
In context ↗ - Muscle weakness
I get weaker and weaker
In context ↗ - Anxiety & low mood
I already thought about assisted suicide because the feeling of adrenaline is unbearable.
In context ↗ - Gut problems
Natural antibiotics like oregano oil make my chronic stomach and intestinal inflammation worse
In context ↗ - Vision problems
there comes a strange feeling of happiness and lights flashing in front of my eyes
In context ↗